WXIA Reports on Autism

A previous post included the first of Atlanta station WXIA's series of reports on autism.  Below are more:

• An interview with Anna Bullard, mother of Ava Bullard, who has lent her name to "Ava's Law."
• A report on legislative lobbying.
• An interview with Ava's Law sponsor Ben Harbin. 
• A piece on support for the bill from Home Depot founder Bernie Marcus, who also founded an autism treatment center:

Chair in Adult Autism

A release from Rutgers:

Two families, longtime friends who between them have three sons on the autism spectrum, have made a $1.5 million gift to Rutgers University to endow a faculty position in adult autism, a field in which there is a critical shortage of trained professionals and support services.

The Karmazin and Lillard Chair in Adult Autism is being established by Dina Karmazin Elkins, daughter of Mel Karmazin, philanthropist and the former CEO of Sirius XM Radio; Michael Lillard, Chief Investment Officer of Prudential Fixed Income, and his wife, Amy.

The endowed professorship is unique in that it is specific to adults with autism and will address much needed intervention and research for adults with autism spectrum disorders from both academic and training perspectives. It will be based at Rutgers University’s Graduate School of Applied and Professional Psychology, (GSAPP), which for decades has been providing leading-edge services to children and adults with autism spectrum disorders and other developmental disabilities.    

“The Graduate School of Applied and Professional Psychology has a strong desire to work on finding innovative ways to help adults with autism, a goal that is close to our hearts,” said Amy and Mike Lillard, whose two teenage sons are on the autism spectrum.  “The school’s history of providing services to those with disabilities and educating students to continue that work makes Rutgers an ideal place for a chair in adult autism.” 

A Potentially Controversial Contribution

The Autism Society will be getting a contribution from a controversial source. A press release:

On January 20th, 2013, leading cigar provider TrueTobacco.com will be donating the proceeds from every blunt the company sells to the Autism Society of America. If you're an aficionado of these popular round tip cigars, mark your calendar.

Throughout 2013, TrueTobacco will be supporting the efforts of many of the national and international organizations that make a positive difference in our lives. On each one of the company's designated Days of Service, one nonprofit will be the beneficiary of all proceeds made that day through the sale of one of TrueTobacco's popular line of products.

"We believe in giving back," says TrueTobacco general manager Nick Gordon. "We couldn't have achieved the high level of success we have if we didn't have a community rooting for us. We're rooting for our community as well. Of course, if you're an Internet business, your community has a broader geographic base."

Why might this particular contribution be controversial?  From HHS:

Tobacco exposure during pregnancy is harmful to a baby. A new study finds that it may increase a child’s risk of having certain forms of autism spectrum disorder, or ASD.

Researchers looked at 600,000 pregnancies from areas included in the U.S. autism surveillance program of the Centers for Disease Control and Prevention.

Amy Kalkbrenner is at the University of Wisconsin-Milwaukee Zilber School of Public Health.
“For those children that had high functioning autism, there did appear to be somewhat of a signal between maternal smoking and pregnancy and that risk of autism.”

Women should not smoke while pregnant and should avoid exposure to second-hand smoke.

It’s estimated that one in every 88 children has some form of ASD.

The study is in the journal Environmental Health Perspectives.

Learn more at healthfinder.gov.

Technology, Customized Learning, and Special Needs Students

Previous posts have discussed the use of computer technology in helping ASD people. Tom Vander Ark writes at Education Week:

A Fordham report suggests the nation can save $10 billion if districts just budget the same way. But the report didn't even consider the digital learning revolution occurring. Continued progress from primary research combined with the potential of customized learning appears to have transformative potential for special education. 

Leading venture funds have launched funds focused on iPad apps for entertainment. Given the identified potential to meet special needs it may be time for a Special Ed App Fund. .. A fund that combined philanthropic and venture capital could be just the bill. If foundations and donors extracted some of the risk, I think we'd see more entrepreneurs and investors turn their attention to meeting special needs. Heading in that direction, the Department's research arm, IES developed the Small Business Innovation Research (SBIR) Program. Program Manager Edward Metz pointed me to several examples:

• iPrompt from Handhold Adaptive for students with ASD
• Stories in Motion from 3C Institute for high functioning ASD

...

Feel Electric teaches kids how to modulate their emotions with a DARPA-funded version for military families.

...
Federal special education policy may also provide a force for digital education in public education's mainstream, argues Dean Millot, Managing Partner for K-12 at the investment consulting firm Good Harbor Partners. Under the Response to Intervention option, school districts are incentivized to meet the needs of special education students with the same digital technologies that offer mainstream students individualized learning. By this means, the Individual Education Program mandated by law for special needs students could evolve to a standard of individualized learning for every student.

Education, Scarcity, and Philanthropy

Cutbacks in Detroit schools are hitting kids on the spectrum, the Detroit Free Press reports:

Meanwhile, some classes of autistic children -- at schools including Detroit School of Arts West at Langston Hughes and Durfee and Phoenix elementary schools -- were suddenly transferred midsemester because of overcrowding and inadequate planning that left some schools with too many autistic students and other schools with too few.

One parent, Steven Thomas, said a cab showed up at his home in October to take his 12-year-old autistic son, Steven, to new teachers and classmates at Marquette Elementary -- 25 miles east of his current school, Hughes.

Like many children with autism, sudden changes to Steven's routine can set him back. "Autistic children are so vulnerable, why would they do this?" his father asked. Thomas said that after complaining, he was able to keep his son at Hughes.

Bobb said school officials apparently failed to communicate to parents the decision to transfer some autistic students. "These parents' concerns are totally legit," [district official Robert] Bobb said.

At San Jose Inside, Pete Campbell has a suggestion for billionaires who want to give away money:

[P] provide funding for one-on-one tutorial services for kids on the Autism spectrum. Our educational system is woefully unequipped to meet the needs of kids (and families) dealing with this growing epidemic. Autism is this generation’s polio. It will take an incredible amount of money and other resources to meet the challenge. Currently, only the wealthiest among us are able to provide for the care necessary to “mainstream” some of these children.

A comment on the post suggests that an even more effective use of the money would be to support training instead of direct services. This approach makes great sense in the case of autism, given the shortage of highly trained therapists.